When a Parent Has Cancer: A Guide to Caring for Your Children

WHEN A

PARENT

HAS

CANCER

A Guide to Caring

for Your Children

Wendy Schlessel Harpham M.D.

For My Children

REBECCA ANNE

JESSICA MARTHA

WILLIAM SAMUEL

CONTENTS

Cover

Title Page

PROLOGUE Our Story

1 Meeting Your Children’s Fundamental Needs

Turning Problems into Strengths

Establishing Open Communication

Understanding Children’s Fundamental Needs

Telling the Truth

When Advice from Others Seems Intrusive or Annoying

Perfect Parenting Is an Illusion

2 Caring for Your Children Through the Crisis of a New Diagnosis

Breaking the News

Teaching Children That Cancer Is Not Contagious

Preparing Children for Changes in a Life-Enhancing Way

Empowering Children

3 Caring for Your Children Beyond the First Few Weeks

Learning to Recognize Choices That Are None of the Above

Helping Children Through Unpleasant Changes

Sorting Out Priorities

Creating an Energy Bank Account

When Children’s Needs Are Not Met

Knowing How Much Detail to Tell Children

Providing a Framework for Dealing with the Changes

Children Experience Stress Differently Than Adults

Understanding Children’s Questions

Protecting Children’s Need for Normalcy

When Cancer Seems to Be the Only Focus of Attention

Handling the Crises

Family Meetings

Doing What Feels Right for Your Family

4 Grief, Fear, and Children’s Other Emotions

Dealing with Loss and Grief

Dealing with Fear

Helping Children Work through Negative Emotions

After a Bad Day

Using Play as a Therapeutic Tool

When Laughter Can Be Healing Medicine

Dealing with Regression and Failure

Knowing Whether Children Are Doing OK

5 Helping Your Children Live with Uncertainty and Tame Their Fear of Death

Dealing with Uncertainty and Faith

Dealing with the Possibility of Recurrent Cancer

Helping Children Face Their Fear of Death

Knowing If You Are Dying Now

Understanding Children’s Conception of Death

Breaking the News of a Poor Prognosis

Matching Your Degree of Optimism with the Facts

Preparing Children for Your Death

6 Family Members with Special Needs Teenagers, Single Parents, the Well Spouse

Caring for Teenagers 101 Understanding Issues Common to Teens and Youngsters

Caring for Children in a Single-Parent Home or When the Parents’ Marriage Is Unstable

Caring for the Well Spouse

7 Taking Care of You

8 Caring for the Children When Cancer Recurs or Becomes a Chronic Disease

Facing Recurrence—the Patient

Facing Recurrence—the Well Spouse

Facing Recurrence—the Children

The Truth Pact

Your Children’s Needs This Time Around

Living with Chronic Cancer

Creating a New Normal

Problems: Cancer-Related or Other-Related?

Choosing Your Battles

Avoiding Pity

Expecting vs. Hoping

Rituals and Routines

Finding Joy

Preventing Burnout

Conclusion

APPENDIX 1 Major Stages of Growth and Development

APPENDIX 2 Glossary for Kids

APPENDIX 3 Resources for Parents and Children

APPENDIX 4 Annotated Bibliography

Acknowledgments

AUTHOR’S NOTE

About the Author

Praise for When a Parent Has Cancer

Important Message to Parents, Friends, and Extended Family

How to Use Becky and the Worry Cup

Copyright

About the Publisher

PROLOGUE

Our Story

First comes love, then comes marriage, then comes baby in the baby carriage. The limerick to which I jumped rope as a child became a fulfilled prophecy with the birth of Rebecca five years after I married Ted. Two years later, we were blessed with Jessica, and, another two years later, William. Our family now complete, Ted and I knew we’d live happily ever after.

For me, happily meant figuring how to balance the demands of my solo practice of internal medicine, Ted’s career as a university professor, and the ever-changing needs of our growing children. In the fall of 1990, soon after turning thirty-six, I was still climbing the steep slope of the learning curve when I was hospitalized with excruciating leg and back pain.

The day following emergency exploratory surgery, my doctor came into my hospital room and explained that I had non-Hodgkin’s lymphoma, a cancer of the lymph system. I knew what I had to do because, unlike the average patient, my training as a physician had taught me the ropes of obtaining excellent medical care. Unfortunately for me, I also knew what lay ahead. I’d been privy to my patients’ cancer experiences. Treatment for lymphoma is an ordeal that changes a person’s life forever after. When the person survives, that is.

With graphic images flooding my mind—baldness, vomiting, radiation tatoos, hospitalizations, surgeries, and dying—my first thought was, Oh, no. My children, my children. I was overwhelmed by the thought of them, not yet two, four, and six years old, suffering emotional damage because of my illness. The idea of them possibly losing me was unbearable.

I wasn’t the only one traumatized. While I was lying in the cocoon of my hospital bed, focused on my leg pain and fear of dying, Ted was dealing with the normal world and our very normal children. Ted told me how he drove home alone from the hospital after learning of my diagnosis. He was dazed, afraid, and worried when he was greeted at the door by our three little ones. While his heart told him to devote himself totally to me, his intellect commanded him to tend to the children. Rebecca, Jessica, and William needed him too, although in different ways.

Instinctively, Ted swore to himself two things: First, not to lie to our children. My illness was going to be a long-term affair and he needed their trust. And second, to try not to think about me when he was with the children because they needed his undivided attention. Our shocking news was their crisis, too, as life-altering for them as it was for us. Ted sat down and told them the news, gently and simply.

Life with cancer and treatments was not easy. During the months following my diagnosis, routine matters such as changing diapers, doing laundry, providing daily meals, and fulfilling car pool obligations were accomplished only with the help of friends and family. Special occasions, such as school plays and ballet recitals, drained physical energies when I could attend, and emotional reserves when I couldn’t. My own anxiety, fear, and fatigue made the normally challenging ups and downs of rearing children even more so.

How could I possibly be a good parent under such oppressive circumstances? The answer began with accepting that I did not have a choice about cancer entering our lives, and deciding to see my illness as a strengthening force for my family. With these first two steps, something magical happened: in certain ways, parenting became easier than it had ever been before. By making me painfully aware of the fragility of life, cancer clarified my parental duties, restructured my priorities, and taught me how to live in the present, in my children’s current moment. The dreaded cancer invading my body inspired me to embrace the parenting I could do each day and generated an urgency to create a wealth of life-enhancing examples and experiences. The way I saw it, the lessons and loving memories the children stored of our todays were my insurance that they would grow strong and feel my love through all their tomorrows, no matter what happened to me.

Nurturing Rebecca, Jessica, and William nourished me. Daily hugs and developmental milestones became celebrations I felt a thousand times over. Unwanted circumstances became opportunities to teach them values and demonstrate unconditional love. Spilled milk, rained-out picnics, and skinned knees became welcomed occasions to help them learn how to deal with stress, change, and loss.

This magic did not happen overnight. A few weeks after my diagnosis, my children’s delight in the flickering Chanukah candles triggered great anxiety in me: They might kindle lights without me next year. Far from savoring the seasonal love and joy, I was swallowed by fear, anxiety, and grief.

Later that evening, when Rebecca got out of bed for the twenty-millionth time and came into our room, I saw her beautiful, doll-like silhouette as an annoying intrusion, preventing me from getting the attention and rest that I needed. Half-scolding, half-pleading, I led her back to bed, tucked her in one more time, and said between clenched teeth, "Darling, if you can’t fall asleep, look at your picture books for awhile. But please stay in bed. I need time with Daddy. What I was thinking—in fact, screaming—in my head was, Don’t you know that I have cancer? I feel miserable. I’m upset. Why can’t you just take care of yourself and leave me alone?"

Although my belief in the potential positive power of my illness was born within weeks of my diagnosis, the magic was a gradual process that depended on me, and not the swish of a fairy’s wand. I had to learn how to live with my disease and better understand how to raise my children. Even after I felt empowered to parent well, not every hug or smile was appreciated, let alone celebrated. There were times when my own emotions or physical sickness kept me from saying or doing what I knew to be the right thing. Through it all, the best I could do was the best I could do.

Ted and I spent considerable time discussing how to educate our children about my health situation in particular and about cancer in general without making them afraid. One of our biggest problems was determining the needs of each child. My two-year-old, William, had very few special needs and no concept of the significance of my illness. For him, cancer simply meant Mommy was home more, a good thing, all things considered. Four-year-old Jessica needed extra physical contact and had a real sense that this illness was important. But she lacked the maturity to really understand what was going on, or why it was out of the ordinary. Rebecca also needed extra physical closeness, but her need for emotional reassurance was even greater. At six, she grasped from the beginning the seriousness of my leg pain and my not being able to work. She was just beginning to understand and worry about the concept of death, and gradually came to understand the life-threatening nature of my illness. The usual adventures of kindergarten became more emotional and complicated in the setting of cancer.

While teaching my children about cancer, I did my own research. During the seven months of chemotherapy, I distracted myself from the discomforts and stresses of the treatments by reading much of the professional and lay literature on cancer and then writing about this common illness. This diversion into writing was self-healing both for what I gained in knowledge, insight, hope, and comfort and for what I could give to others. Too sick to care for patients in my office, I could fulfill my childhood dream of being a physician through books.

The manuscript of Diagnosis Cancer: Your Guide Through the First Few Months was completed by the time I finished my chemotherapy and was pronounced in remission. I then passionately threw myself into researching and outlining the manuscript of After Cancer: A Guide to Your New Life because it was painfully clear that the cancer experience does not end with the last treatment.

As I struggled through my own recovery, and began to write about life after cancer, one realm of survivorship kept crying out to me—the children. During many hours of private counseling with the hospital social worker, my concerns often revolved around how my children were doing and the tensions I felt as a mom recovering from cancer. Between these sessions, there were innumerable phone calls with two other moms whom I met through a support group, who also were recovering from treatment. Susan’s fourth son was just two weeks old when she was diagnosed. Sharon’s second child was four months old. Our oldest children were all the same age. Telephone calls were volleys of frustration, fear, anxiety, sadness, and confusion, which played around the same questions: What is happening to my children? and How can I help them?

Trips to the library and bookstores turned up plenty of books for teaching a young child about death. That definitely was not what I needed or wanted. There were only a few short illustrated children’s books about a parent with cancer who recovers, and fewer adult texts offering any information or advice about caring for my kids. The children’s books didn’t attempt to go beyond a superficial discussion of what cancer was, the most obvious effects of cancer treatments, and the children’s emotions. Unlike these tidy storybook tales with happy endings, my illness was drawn out with a rocky recovery and an uncertain future. My daughters and son needed more than what was offered in the available books.

Even when a parent’s course is relatively short and smooth, the children need more detailed medical information and practical advice to help them deal with the stresses, changes, and losses. I toyed with the idea of writing some sort of kid’s guide dealing with a parent’s cancer—a book for children like Rebecca, Jessica, and William. But I needed a different format from that of my adult books if the message were to be meaningful for youngsters. Unsure how to proceed, I put the idea on the back burner.

A year later my first book, Diagnosis Cancer, was published. While awaiting the arrival of a newspaper reporter who was doing a piece on the new book, Rebecca, then seven years old, asked, Is she going to interview me? No, honey, but I can, I responded intuitively. I’ll use your stories and advice to write an article to help other children whose mom or dad has cancer. Although my premise was true, my primary motive was to encourage Becky to talk. She needed to talk.

Tell me things that are hard for you when I’m sick…. Tell me things that help you, I asked in my pretend interviewer voice. Becky freely acknowledged a few of her unpleasant emotions while demonstrating some understanding of several of the coping skills we had developed together during the months of my chemotherapy: her frustration with my hospitalizations and slow recovery from treatment, her fear of cancer that prompted visualization with a lollipop symbol, her sense of uncertainty about the future, the dawn of her realization about the unfairness of life, and her lingering feelings of sadness and anger.

After she read the first draft, I asked as nonchalantly as I could, What stuff did I leave out?

She responded, You know. Being scared about … you know. Yeah, I knew: death and dying. Two weeks before the interview, eleven months after completing my initial chemotherapy, I was diagnosed with recurrent lymphoma. During the following weeks Rebecca shared feelings about death in general, and my death in particular. She never came straight out and said, Mommy, I’m scared that you are dying. Over the course of a number of days, during which period she was irritable and cried often, we talked about the changes going on—the cancer, the radiation treatments, the decision to close my medical practice, the need for her grandparents to move in for a while to help out, and so on.

Every night after I tucked her in, as was our usual routine, we’d talk together before I sang her lullaby. I’d ask her to tell me about her day or anything else she wanted to talk about, making sure to address any questions about what was happening to me or her. One night she started asking questions about one of our dogs, Curie.

How old is Curie? How long does that kind of dog usually live? When do you think Curie will … you know …? What’s going to happen if she … you know …? She then asked about her grandparents, how old they were, how long old people usually live, what was going to happen after they … you know.

Are you worried about me, Rebecca? I asked calmly. She started to cry and confided, If you die I will miss you so much I won’t be able to stand it. I’ll never feel happy again.

At that most frightening time for me (facing my first recurrence), I reassured Rebecca that even if her worst fears (and mine) happened, and I died, she would be taken care of, she would continue to receive lots of love from remaining family and friends, and she would feel my love for the rest of her life. Through my own watery eyes, I looked into hers as I explained that my death would make her very sad at first and she would always miss me, but she would get used to it and not feel so bad after awhile. With time, she would be able to feel happy again. We hugged for a long, long time.

I concluded the discussion by reminding her, "I’m not dying now, Rebecca. We are expecting the treatments to get me well again. I promise to tell you if my doctors ever think the treatments aren’t working and I’m getting worse. If ever you want to talk about it, just tell me. OK? She nodded. Becky, as long as I’m doing OK, let’s think about how to get through the treatments and have the best summer we can." I sang her lullaby and kissed her goodnight.

Having Rebecca face her worst fears, and realize that she would survive them, calmed her terror and mine. I said and did the right thing that night. How did I do it without falling apart? Time-consuming preparation had taken place in the months before that conversation: I’d looked inside myself over and over for what I believed. Ted and I had discussed the possible responses. In my head, I’d experimented with various ways to express my thoughts and feelings and then rehearsed the words that sounded best. And the night of our pivotal chat, I cried after she fell asleep.

As painful as it was for Rebecca and me, facing our worst fears allowed us both to move forward. Rebecca thought that by taming these fears, she was done with them. I knew better. No matter what happened, but especially if I developed future problems, she would be facing these fears again. Dealing with them up front helped her cope that week, but it also laid a foundation for getting through future troubles. Ever since that night, it has been easier for us to talk about death. We don’t need to very often because we’ve found honest responses to her questions like Is Mom going to die from her cancer? and What will happen to me if Mom dies? We don’t like the answers, but we can live with them. And we do.

Rebecca’s response to the first draft prompted me to give a worry cup to my daughter and her storybook counterpart. When a parent has cancer, children wonder and worry about death, on some level, whether they talk about it or not. By dealing with these difficult questions in Becky and the Worry Cup, I hope to encourage other families to find answers they can live with.

Over the next four years, I periodically reworked the manuscript, and then asked Becky what she thought. Each time she revealed a little bit more about herself. For example, the first draft addressed her feelings about my appearance by having Becky in the story say, I always thought Mom looked pretty in her scarves. One year later, I was diagnosed with a second recurrence and decided to commute to California to take part in a clinical trial. Before I left, we took out Becky and the Worry Cup. This time, as we read the section about the scarves, she interrupted me and confided, Mom, that’s wrong. I never thought you looked pretty in your scarves. You looked weird and I was embarrassed to be seen with you. Didn’t you ever notice that in the stores I wouldn’t stand right next to you?

I had never sensed her discomfort with my appearance, even in retrospect. At the time that we worked on the first draft, she felt obligated to be kind about my appearance, and guilty about her real feelings. Maybe it was her being older, but I believe it was her anger about my second recurrence and my leaving her to get cancer treatment in California that removed the inhibition to revealing her true feelings. If Rebecca felt that way, surely other children had similar feelings.

Almost three years after interviewing Rebecca, I read the latest draft of Becky and the Worry Cup to William, now a vivacious six-year-old who had heard none of the earlier versions. He remembered little of the actual events surrounding my chemotherapy or radiation treatments, and seemed eager to learn about my disease. Ironically, a few weeks later a routine checkup revealed progressive disease for which a course of chemotherapy was advised. When I informed my children, William said nothing.

That night, after I’d put him to bed, I began my daily exercise workout in my bedroom. Ten minutes later, William silently crept in my room with an armful of new drawings. He laid them out on my bed, leaving a big paper heart on my pillow. When I caught sight of him, he explained with a smile, I’m practicing for when your counts are low.

In Becky and the Worry Cup, I explain that low blood counts from chemotherapy increase the patient’s risk of catching infection. I then offer suggestions for how children can overcome their loneliness and sense of helplessness during the times when they can’t be too close to their ill mother or father. However confused or frightened William might have been about the news of my impending chemotherapy, he felt he could do something about it. Becky and the Worry Cup shows children that they can do something about the monster (cancer) in their home.

Becky and the Worry Cup reaped the benefits of the many ups and downs of my illness. Each climb on the roller coaster of cancer afforded me a new view, or a better view, of what was happening with my children. Each hill was an opportunity to practice what I’d learned, and find new ways to help them with all the little and big problems.

When a Parent Has Cancer, the companion book, began as a short postscript for parents to the original children’s story. Just as Becky and the Worry Cup grew with each passing year that my family dealt with cancer, so did When a Parent Has Cancer. Other families can choose to leave some issues unexplored when the parent’s illness is brief and uncomplicated. Ignoring the breadth and depth of family problems was not a realistic option for me. Since I didn’t get well, and I didn’t die, my family was stuck dealing with cancer. I had to continue to learn about what was happening with my kids, and find new and better ways to help them. The long ordeal also meant that I had the luxury of time to find out what worked and what didn’t, and to learn from my mistakes. In keeping with my lifelong tendency to look for silver linings, every time I discovered something about parenting that was practical, philosophical, or simply beautiful, I added it to the manuscript.

For most of the time between 1990 and 1998, I had cancer. Unexpectedly and amazingly, the eighth round of treatment I received in the summer of 1998 prompted a remission that has persisted to the present, giving new meaning to my oldest mantra, There is always hope. Follow-up scans and doctor visits occur less often and have become so humdrum that I recently had to leave notes to myself on my refrigerator and bathroom mirror—Scans today—to keep from forgetting and missing my appointment!

During all the years of raising my children while going through cancer treatment, I knew that only time would tell the long-term effect on them. Now, some of the effects are apparent. For instance, one day my son came to me with an innocent heat rash. As I examined the little red spots, he asked, Could it be cancer? Although I find it sad that cancer would even cross his young mind, I think it’s terrific that he didn’t hesitate to show me his concern. Thanks to our well-established bond of trust, I could reassure him easily, and he could (and did) let go of all needless worry. My children may not enjoy the bliss of ignorance or the comfort of denial because they are too well aware of the possibility of developing a serious illness. For me, the reward is that they seem to know how to benefit from early intervention.

It’s important to note that my son did not appear at all panicked by the thought that his rash might mean cancer. I suspect it’s because my kids appreciate that not all cancer is the same, and that cancer is not a death sentence. Their hopeful perspective was evident when a colleague of mine was diagnosed with lymphoma. In sharp contrast to the reactions of all the adults, my middle daughter blurted out, Now he can be a survivor, too!

Gratitude permeates the lives of my children. The night after shopping for a gown for homecoming, my oldest and I were saying our good-nights. Out of the blue, this child who rarely if ever mentions my illness said, I had so much fun with you today. If you had died, we wouldn’t have had that. Her awareness of what might have been lost made her truly appreciate a moment that I suspect most teenage girls take for granted

Empathy springs forth like running water. In the middle of a high school physics lesson, Becky discreetly left the classroom after another student had dashed out without